A while ago I made that sticky thread about “Useful stuff to know” after grouping together assorted tips and experiences from posts here, but most of which resulted from James C. starting a thread called “Things I wish I’d known before I had surgery” (or a similar title).As James’s thread was originally all about surgery it’s not surprising many people commented on my sticky thread having so much emphasis on surgery and little mention of other treatments. For a while I have wanted to expand the sticky thread to include more, but I was reluctant to put together anything about something I had had no first-hand experience of.

Well, I’ve now had Radiation Therapy as well as surgery, and feel more qualified to add something about Radiation Therapy (also called radiotherapy in the UK etc), especially as my SRT seems to have done what it was meant to and given me a PSA below 0.1.

So this is a call to all of you, patients and partners etc to respond with helpful tips about RT that I can put together to turn into something that can be added to that sticky thread to provide help for as many as possible.

Radiation therapy comes in many shapes and sizes, so for starters I think we will need to cover:---Those that have Radiation Therapy as their primary treatment, which in turn needs to cover both external beams and internal seeds. (Use of RT as a primary treatment happens for a variety of reasons but is often used in cases where surgery is not possible or where the cancer is known to have spread.)---Those that have had Adjuvant Radiation Therapy more or less immediately after surgery. (This is used for people where it was perhaps clear straightaway from the surgery or the pathology that something extra was going to be needed.)---Those that have had Salvage Radiation Therapy. (When a number of months or years after surgery there is a BCR, ie a rise in PSA level).The above are all essentially Curative treatments, but also needing a mention will be different use of Radiation Therapy, which I guess I can call Palliative RT where smaller doses of RT are used to alleviate pain when the cancer has metastasized to bones etc.

Another angle worth covering will be you knowledge about the combination of Radiation Therapy with Hormone Therapy.

All contributions and suggestions will be welcome.

Alfred(And to keep this ticking over I will obviously bump it every once in a while.)

Good idea Alf and it might be many lines or pages to get all the details and information made to clarity. Applaud your effort for trying to make it more understandable and fully disclosed which is very important.

Your other thread on the fPsa and non total disclosure, seems to be the way alot of things are, this is why folks have to be proactive and even demand things...that should be given to them or disclosed to begin with, becomes a game almost only the patients have the most to loose and so why is anyone playing games?

I will be talking to oncologist on 9-29-10 re: follow up treatment after robotic on 9-8-10. Cleveland Clinic is about 2 hr drive one way from home. Am I going to require someone to drive me to and from on a daily basis? Or is this a treatment that may not require a driver?

I had a drive of about 45 minutes each way. I did not need anyone to drive for me at any point in the 39 sessions.

I did have to pull over along the way to treatment to drink my 500 ml of water at the appointed number of minutes before treatment (quantity and time may vary for you - depends on getting the bladder to a certain position), and generally had to stop on the way home to empty my bladder a second time (they will probably point you straight at a restroom as you come off the table each day). I quickly found a grocery store I would normally shop at anyway that was on the path. Felt a little less guilty for using the facilities without buying something.

I did suffer greatly, and to some degree still do, of severe fatigue later in the day. My sessions were mid-morning, so that was not enough of a problem to ask for help.

Thinking in terms of 2 hours - I could see that if treatment was late in the day (say 4pm), and I had to work a full morning, I would allow for a possible need for nap before I headed out for the clinic by about week 6. Mind you that some people do not report fatigue as a side effect, and my Rad. Oncologist insisted it wasn't a real side effect, but I had it, and you might.

Many, but not all, of the people in my clinic environment were PCa patients. Only one of the PCa guys was with his wife every day. They were both retired, so it was together time - they explained that they were with the grandkids all day, and this was their "break". Many of the men were like myself - take just long enough off work to get treated and return to work.

I did notice that many of those who were there for other types of radiation had someone with them. Not knowing what internal problem they were there for, I did see that many had physical reasons to need help.

I did have friends who had other types of radiation tell me that I would need a driver. I suppose that the area the radiation is working in has a lot to do with the impact.

In comparison to Alf's situation, I suspect that there are no less than 5 clinics of the size of the one I went to within a 50 miles radius of me.

Not everyone seems to be affected by tiredness the same way or to the same timetable. But there will clearly be a difference in how the tiredness etc affects your ability to manage a (long) journey towards the end of treatment compared to at the beginning. At the beginning I would guess you'd not have much problem driving there and back. Half way through you might have to rest before or during the journey back, and at the end you might be tired on the way there as well. I think you would be advised to work out who could share the driving etc. just in case you need them.

When I was in the waiting area before RT, I was one of the few people on my own. nearly all guys had come with their wives, but occasionally they were with a son, daughter or male friend. (It was also noticeable that non-PCa patients at the department were also not alone.) I was also one of the few people travelling to and from RT on the train. (My hospital is a mile from a train station and there are more than four buses per hour between the two, though in the beginning I was happy to walk. I then had a through train every half hour to the city I live in and then it was a ten minute journey by metro/street-car to a stop 200yards from my door. No delays in traffic, no parking problems etc)

Knowing where rest rooms are on your route is a must (WC on the train was another advantage) thus your level of continence will also be relevant.

Someone here who had a long round trip for RT posted that for six weeks he stayed with friends who lived near the hospital.

The time of day you have to travel will also be a factor. As will whether or not you are fitting it in with your job, plus what kind of work your job involves. (It is almost certain that the RT will only be done on weekdays.)

Alf, here is just one more treatment situation, one I have done:Hormone Treatment of Casodex, then a 90 day Lupron, open surgery 60 days after the Lupron shot, another 90 day Lupron, 30 days after surgery followed by 33 radations, 16 weeks after.

I had no problems driving myself the 220km. return trips but now, 3 months after completing the IGRT, I am easily tired doing just about anything and 'enjoy' (?) daily naps, mid-afternoon.

With having gone thru all the above, I really dont know on what to blame my ongoing incontenance (requiring a daily pad) and have absolutely no interest in sex. None, as in ZERO ! No morning woody's ever in fact I have difficulty finding the now, little fella when showering. And to remember that my wife was first attracted to me because of a somewhat aggressive sex drive !

142 - don't worry about an extra post or two with extra details it will make the thread read more easily than iof you go back to an earlier post and edit it.

JB71/Jerry - Am I right that your Casodex plus Lupron prior to the surgery was to help shrink your prostate to make it smaller for surgery, (as well as to stop the cancer growing while you were waiting for surgery) and thus also that open surgery was carried out because your prostate was too big for the robot? And that the Adjuvant RT plus HT was because of your post-op pathology having a T3?

i guess there were no surprises with my IGRT; i had been pretty well prepared by doctors and radiation clinic staff. i had a five-minute drive each way. i wore shorts everyday or sweats so i didn't need to dress out.

things you'll want to know but should be told....

-- drink about 8 ozs. of water about 10 minutes before you hit the table.

-- take aleve twice a day and you should be on flomax or something similar (i insisted on flomax).

-- get a good cream for radiation burns. i bought udderly smooth cream but didn't use it and i got burned pretty bad at the end. the clinic will tell you that you won't get burned.

-- if you are having any discomfort -- crapping gravel, getting up eight times a night to pee -- make sure you tell your doctor because they have plenty of stuff they can give you. i saw a couple of guys who had to wear catheters to get through radiation. i had discomfort and fatigue is still a slight issue but i also had BT and am still on lupron so i think i have tolerated treatments pretty well.

today i go for my one-month follow-up from IGRT. i have weaned myself off flomax.

Alf,Great idea for a string of "useful to know" things about radiation. I had both BT and IGRT...and offer the following (some of which may be repeats by others):

BT- Home the same day of procedure, no catheter, no real pain or discomfort. Sore throat from the breathing tube while I was "under" cleared up the next day. - On the second day, started to experiece burning, frequency, and urgency associated with urination....all of which had been explained to me by the radiologist (also some blood in the urine). Started on flowmax at that point.- One surprise that had not been explained to me.....for a week or so after the seed implant I had a "black and blue" scrotum...no real pain....just a lot of discoloration.- Was able to resume all normal activities almost immediately.

IGRT (25 treatments - began 60 days from the seed implant)-Prior to first treatment clinic placed "tattoo's" on both hips and abdomen and made a unigue cast of my legs to help line me up on the machine. - Drove myself each weekday...20 minutes one way. Drank at least 12 oz of water on the way.- Treatments were at the same time each day...10 AM. I rarely spent more than 10 minutes in the waiting room before they called me.- Once on the table and lined up, all my treatments started with an untrasound to make sure the bladder was "out of the way" and alignment was OK.- After treatment I would have to make a bathroom stop at least once, sometimes twice on the way home. Started taking a second Flowmax each day.-After the 3rd week, I hit the wall with fatigue....was pretty tired by then end. Fatigue went away about 30 days after last treatment.- Did not experience any radiation burns....perhaps because I only had 25 treatments.-Back to one Flowmax/day.

Hope this helps someone's understanding down the road.

Thanks for pulling this together Alf. (I hope the Queen's Park Rangers are at the top of their table)

Alf, you are correct about the Casodex/Lupron bomb but the open surgery was not because of the prostate size, only 44cc but the high Gleason score of 8. Although my surgeon, Dr. J. Chin is one of the better known robotic surgeons in Ontario, he elected to do open. The adjuvant radiation was recommended by the oncologist, a Dr. Glen Bauman who did allow me to have it postponed by up to 17 weeks in order that (hopefully) my incontinence would improve somewhat. It did some but he also warned me that at whatever level I was at, on the day of first radiation, I would live with that for the rest of my days.

I'm afraid I can't remember who posted it, but a few weeks ago someone said that they had been given RT with a catheter in them as they had had so much trouble keeping anything in their bladder.

Now as I understood it from my own experience a full bladder was needed to push things into the right place so that the RT damaged the prostate bed and didn't damage any healthy tissue too much. Thus at first glance putting a catheter in in order to empty the bladder seems the opposite of what you need to do and makes me thing of David/Purgatory and his problems.

But, was the catheter usage mentioned actually using the catheter the wrong way round, ie to fill the bladder. I'm assuming that this filling would be achieved using the same technique they used for my cystoscopy namely clamp the output side of the Y junction of the foley shut and fill the bladder with sterile liquid using a drip connected to the input side of the Y. This sounds like it could be a way of ensuring that the bladder contained Exactly the same amount of fluid for each session of RT and that the bits and pieces inside you are in exactly the same positions!

Exactly, Alf. They want the bladder as full as possible so it reflects the images they took prior to RT. They also don't want you to try and lose weight during treatment so the images don't change. That's why you have to drink all the water before a treatment and why you have to find a restroom as soon as you're done. There was a restroom right outside the door of where mine was done so it was just a quick pit-stop.BobAGE:58 Dx: October,27, 2008(the day after my birthday)

This is great thread in the making, and the collected info will be a godsend to anyone needing it.

Tell me how I can help. As we all know, my SRT experience was a rare perhaps, but still a terrible experience, culminating in me needing a major urinary diversion surgery. As the result of severe radiation damage, I will now for the rest of my life, have to pee through a stoma in my side into a bag. Forever. I still have 8-10 weeks of slow recovery to finish, then many months of physical therapy.

Two things, and this usually wouldn't happen:

Do not let anyone radiate your prostate bed "dry" without water or a full bladder, no matter what they say. The norm is to drink the water as most all of you guys have had to do.

If you have to have a catheter in place like I did during radiation, the clinic could have easily injected saline/sterilized water up through my cath just prior to be zapped each day. It would have served the same purpose of protection. My rad oncol kept insisting that she compensated for that and obviously it didnt.

Finally, almost no one feels physical burn or pain from being zapped, granted, but some do, I did from treatment 4 through 39. A concious doctor would have delayed or stopped treatments until they could get to the bottom of it. Mine didn't, spent 2 weeks of painful treatments before she began to admit that perhaps I was getting scattering effects, something that is suppose to be minimalized with IMRT. Despite requiring 2 operators to lift me up after treatments because of the pain, she never delayed even a single treatment. Me, dumb axx, thought I was suppose to be compliant and tough it out.

11 months after radiation has ended, I still have serious walls of daily chronic fatigue from the radiation, now further complicating my current recovery.

I can supply all kinds of info for you listing, just need to know what else would help.

David - thanks for that reply. It's been said before, but I am sorry they seem to have messed up your RT so badly.

I think that as with James's original thread about tips before surgery the idea is that the RT stuff to be put on the sticky should be exactly the type of thing you mention. ie our personal experiences and suggestions etc and the stuff the books and doctors don't really tell you.

the type of things it might include are:

#There are different types of RT. If you have to have RT find out about all the options and combinations. RT can be Internal (seeds) and external (Primary, Adjuvant, Salvage, Palliative) Beams can be strong X-ray(Photon) or Proton. etc

#The docs need to work out where to aim the RT, part of this aspect will include a 3D CT scan of the area to map out your internal anatomy. A laser system connected to the scanner can measure you but it needs to have fixed reference points to work from, and to provide these fixed reference points they will make three, or perhaps five, tiny little tattoos on your skin. They are really tiny and a few weeks after RT, when you don't see them in use every day, you may even have trouble finding them. The tattoos should all be about where the waist of a pair of Speedos would be, so only your partner is ever likely to see them!

#During the RT the operators may also make lines or circles on your skin with marker pens - this will wash off a few days afterwards, but it will also rub off on your clothes so wear dark colours!

#The idea of RT is to damage the "bad" tissue where the prostate used to be so, if all the RT was aimed from one direction, then all the healthy tissue en route to the prostate bed would get as damaged as the target area. Therefore instead of this several beams are aimed in from several directions so that only the area where they intersect receives the full dose (if they aim from 7 directions then the healthy tissue only receives 1/7th of the dose) RT thus takes several minutes as the machine has to keep moving round you to aim from these different directions. The machine also has to be in the right place thus each session will start with them lining up your body and this is where the tattoos get used. They should also take regular 2D CT scans (effectively an x-ray) prior to a session to check that things inside tyou are still where they were when the treatment plan was made

#The docs need to know your full medical history to be able to treat you properly. There is obviously a limit to how much radiation a human being can be given. If you have previously had RT to the head then they should be able to subject your abdomen to RT without there being a problem, but if you have previously had RT to the Abdominal area you may already have had all the RT allowed. Beams get reflected and distorted by objects and if they do they may harm healthy tissue, so make sure the docs know what is inside you eg stents staples wires etc from earlier surgeries including an RRP. (These bit of metal etc should show up on the CT-Scan but better to tell them than to think they will notice everything)

#Not everyone has the same amount of RT - anything between 60 and 80 is possible. Check with your docs why they have chosen to give you your particular dose.

#You need to have a full bladder for RT to keep things in the right place and protect healthy tissue- so you need to drink about half a pint of liquid about an hour before your session starts and not have a pee. So if you think your bladder is not full because you did have to have a pee, then tell them to delay your session for 20 minutes or whatever it takes for things to fill up. After you have had a few sessions you will start to learn how to be full at the right time. But, oh boy, will you be full when each session stops, so find out where the bathrooms are in the hospital. You will almost certainly need to pee on the way home too so reconnoitre the route to locate restrooms.

#RT has side effects, (fatigue, BM problems, incontinence etc etc) but they don't appear immediately the RT starts, they may also appear many months after RT has finished.

#RT should not hurt - if it does tell the operators and get something altered, don't just lie there thinking that it's meant to hurt.

#You may have to do a lot of travelling for seven or more weeks to get to and from your RT, the travelling may or may not make you tired depending on whether or not such journeys are part of your normal routine, but what you have to watch out for is the fact that the RT itself causes fatigue, so even if you live one block from the hospital you will still get hit by the fatigue.

#You may find it easy to drive yourself to and from the sessions at the start but not in the later stages, so have someone on standby who can help with the driving.

#During a session of RT you have to lie very still and flat on you back on a hard surface for about ten minutes. Really still you can't even move your hand to scratch yopur nose. Your body will be positioned to the nearest millimetre . So make sure you can lie still like that, if you're not comfortable on the treatment table then ask for things like extra pillows under your head etc, the operators will willing help as they don't want you to be uncomfortable either as that might make you move at the wrong moment.

# When you get onto the RT table it is about 2 feet off the ground, but it then slides silently up till you are about 4 feet off the ground. So don't try and get off when you are up in the air. When they are finished they will let you know when it is okay to get off. It is not like getting off a bed, there is very little space to roll onto your side etc, so if you need help ask for it.

#In order that the operators can see clearly to line up the machine you may need to remove most or all of your clothes below the waist before you get on the table and then pull up your shirt when on the table - there will need to pull down or remove your underwear to find the tattoos. Think about your clothing. Ask what you should wear, where and when you should undress etc. and if you should take a robe or towel to stay decent if you have to walk between a changing room and a treatment room. (You may meet the previous or next patient if it is a busy department.) You'll be doing it for several weeks so wear clothes/shoes that are easy to get on and off. (When you are feeling very tired at 5pm on a Friday after your 30th session you won't feel like bending down to tie your laces)

#As you have to be in exactly the right position the operators will move your body about on the table by pushing and prodding you a bit - so tell them if they have cold hands etc (it may not seem like a cold hand can be that annoying, but they will be touching your bare skin several times for several weeks. And they don't want you to flinch anyway as that will mean you have moved.)

see what I mean David?

Alf

(And David how's the weight - I've just discovered I've put on 10 pounds in about five weeks - and I'm only 5' 9"?)

your above post is excellent. you have incorporated most of what is important

weight? my SRT ended November 28th of last year. I have been slowly dropping off weight since then. For months before this latest surgery, I have experienced almost a total lack of appitite, natural one I mean. I almost never feel hungry. Been lucky during that time to each 1 or 2 a day, just because I knew I should.

have lost a lot of weight, and stiill losing, from this recent ileal conduit surgery. i am now 18 days out of surgery and have lost a total of 25 lbs already. They are expecting much more over the next 4-8 weeks. I still have zero natural appitite, but now, eating high protein sources and ensure products and even thought I hate vitamins, they have me on a good multi vitamin. i need to keep up the protein, as i have already gotten a lot of muscle apothy in my legs and arms, had no idea it could happen so fast.